Dick Cooper - January 2012

Saving Jason Lee
A Story of Family, Science and Love

by

Dick Cooper

Even after 24 years, the memory of watching their young son battle leukemia brings a torrent of raw emotion to Jim and Holley Lee. Jim’s eyes water as he talks about the years of treatment that their son, Jason, went through. Holley still grapples with a sense of helplessness as she remembers watching Jason being locked in a radiation chamber calling out, “Mommy, I’m scared.”
“But this is a good story,” says Jim as he and his family sit on a sofa in Jason’s computer shop in Easton. It is a good story because Jason, now 30, is sitting on the sofa between his folks, petting Cooper, the mongrel that he just adopted from the Humane Society.
In 1987, the story was not so good.
Jason was dying quickly of a virulent strain of leukemia that takes most of its young victims. After almost two years of local treatment, it became clear that Jason would need a bone marrow transplant, but no one in his family was a match.
The Lees turned to Dr. James T. Casper, a Milwaukee physician who was opening a new field of treatment that matched bone marrow donors to unrelated cancer victims who needed transplants. Jason became the 31st patient to undergo the procedure on September 11, 1987.
In November of this past year, Jason and his mother traveled to Minneapolis to be honored by the National Marrow Donor Program at the Be The Match Registry’s 25th Anniversary celebration. The organization maintains a database of bone marrow donors and patients who need transplants. There, they met up with Lori Groen, the Wisconsin donor who saved Jason’s life almost a quarter century ago. Jason and Lori are the only early transplant participants who are both still alive. The celebration also marked 50,000 unrelated transplants that have saved countless lives.
But, back to the details of the Lees’ long journey.
Jason was a healthy baby, actually quite large at birth. “He was nine pounds, one ounce,” Holley says. “That was the only time he was big,” says Jim.
By the time Jason was five, he was starting to show signs of weakness and was not growing at a normal rate.
“I remember we were at my mother’s house for dinner and he was playing under the table, which was a no-no at my mother’s house,” Jim says. “He bumped his head and there was a knot. We went to the doctor and he didn’t know what it was but he decided to take it off and they ran a biopsy on it.”
The next thing the Lees knew, they were being told that their son had leukemia and they were scheduled for an appointment the next day with specialists at Johns Hopkins University Hospital.
“It was like the rug was pulled out from under us,” Jim says. Holley adds, “All I could say was ‘Is my son going to die?’ I was numb.”
Jason was so sick he was admitted to the hospital for 30 days of chemotherapy and radiation. That was the start of a seemingly endless ordeal of pain and suffering, frequent checkups, followed by periods of remission and relapse into the throes of the disease. Every three months Jason would have to undergo tests of his bone marrow.
Even though he was only six years old at the time, Jason has a clear recollection of those visits. “It was painful,” he says with a wince, “extremely painful.”
On one of the check-up trips to Baltimore, Jim and Holley were waiting when the doctor seemed to take longer than usual to come out to talk to them. With the smooth transition of storytelling that comes from being married more than three decades, Jim and Holley recount that day.
“He came in and he had a long face,” says Jim. “We were the only two in the waiting room that day,” says Holley. “He said, ‘Your son has relapsed, and we can get him back in remission,’” says Jim. “But we don’t know if we will have time,” Holley recalls the doctor saying. “With the technology we have now,” says Jim.
The doctors were able to get Jason back into remission, but with the clock ticking, the Lees decided to take him to Children’s Hospital in Milwaukee, where Dr. Casper was having some success with bone marrow transplants.
“He was kind of an Einstein-looking guy with his hair all messed up,” Jim says. “In his white coat always running around,” Holley says. “He says, ‘I think I can help your son out,’” Jim says.
The family saga was about to make yet another turn. Dr. Casper wanted blood samples from Jim and Holley and their parents. That was no problem for Jim, but when Holley approached her parents, they told her they couldn’t help.
“That’s when Holley, she was 31 at the time, found out she was adopted,” Jim says. Holley says her parents had planned to tell her several times, but the timing never seemed right.
“And then they had to deal with all of that,” Jason says of his parents.
In June of 1987, Dr. Casper called the Lees to let them know he thought he had a bone marrow donor match for Jason. It wasn’t a perfect match, but it was close enough to make it worth a try.
At the time, Jim Lee, a career printer, was working for Waverly Press in Easton, the predecessor to Cadmus Publishing.
“Magruder Passano (owner of the company) came up to me at work and said, ‘I hear you are having trouble with your son,’” Jim says, stopping to compose himself. “He said, ‘I’ll take care of everything.’ He found out about the bills at Johns Hopkins and said the slate is clean.”
Passano told him that he had business friends with a private plane at BWI and they could use it to get Jason to Milwaukee. “He hooked us up with Corporate Angels and we flew first class in a Lear jet because of Mac Passano,” Jim says. “All because of that man,” Holley says, holding back a tear.
But that was just the start of another journey.
While Jason was going through a battery of tests and procedures to get ready for the transplant – loose teeth were pulled as a precaution against infection – the Lees moved into the Ronald McDonald House near Children’s Hospital in Milwaukee. The nominal extra costs were picked up by Easton friends and churchgoers who knew about Jason’s battle.
“The hardest part that Holley and I had to deal with was the total-body radiation,” Jim says. “He was put into this big steel room,” Holley says. “There is a concrete and steel door about 18 inches thick and they closed it and you know your son is on the other side and he can barely hold the lead shield that they made for him,” Jim says.
“They were heavy,” Jason interjects.
“And we are in this little glass room and trying to talk him through it,” Holley says. “He said, ‘Mommy, I’m scared.’”
Jason says, “It was like something you see in a Sci-Fi movie. It was an empty room with this one piece of equipment and it shoots gamma rays.”
After that process, and several others, Jason was ready for the transplant. The Lees say that what came next seemed anti-climatic. The transplant team arrived with the marrow from the donor in an Igloo cooler. The baggie with the yellowish liquid was taken out and the contents gradually injected into Jason.
“I can remember the nurse stood up on a chair so that every last drop dripped into him,” Jim says. “That was Deborah Richards,” Holley says. “And then it was wait-and-see,” Jim says.
In the next few days, Jason started to recover, slowly at first, but then dramatically.
“I requested the records as an adult,” Jason says. “And it was very interesting to look at the blood counts. They started out at almost zero and you wonder, ‘Why am I alive?’”
Enter Lori Groen, the U.S. Postal Inspector who was Jason’s donor. In most cases, the doctors discourage donors from meeting patients in case the transplant does not work and the donor suffers an emotional loss. But in Jason’s case, Lori insisted and the Lees agreed. That was the start of a friendship that has lasted ever since. Lori refers to Jason as her son.
But that is not the end of the story.
Jim returned to his job in Easton while Holley and her mother stayed in Milwaukee. For three months, Jim flew to Milwaukee on a regular basis, exhausting his savings account to be with his family. “We were flat-ass broke,” he says.
Then, one day while he was at work in Easton, he got a call from Dr. Casper.
“It was a Thursday and he said, ‘I want you to know that your son has a bad infection,’” Jim says. “He said, ‘I don’t think your son is going to make it. I need you to come right away.’”
While Jim was flying to Wisconsin, Dr. Casper asked Lori Groen to come to the hospital and donate blood. He then extracted the white cells from her blood and injected them into Jason.
“I take a red-eye, get in about 2 a.m., drive into the city and I get to the hospital and walk in his room and the kid is sitting up watching Back to the Future,” Jim says with mock dismay.
“My favorite movie,” says Jason with a grin.
Jim says, “I asked the nurse what happened and she said, ‘I guess the white cells really worked.’ And you know what? He hit the ground running and he has never slowed down.”
Jason and his parents have maintained close contact with Lori Groen over the years. She came to Easton to attend Jason’s high school graduation. They correspond regularly and had a good reunion in November at the Be The Match Registry’s Council meeting.
Because of her willingness to be a marrow donor, Jason Lee is alive today. After high school, Jason received a degree from Chesapeake College and has received several advanced computer certifications. He now runs his own company, Jason’s Computer Services. He has 2,500 regular customers in and around Talbot County and has built a business that keeps him in constant demand.
Jim and Holley are proud of their son’s accomplishments. But they are happier just to have him sitting on the couch next to them while they retell their family’s story.
Jim says, “After going through something like this, you realize what’s really important.”

For more information about the National Marrow Donor’s Program, Be The Match Registry and how to register for the donor database, go to www.marrow.org.

Dick Cooper is a Pulitzer Prize-winning journalist. He and his wife, Pat, live and sail in St. Michaels, Maryland. He can be reached at dickcooper@coopermediaassociates.com.